STOP BLEEDING Fast & Easy Recommended By 3000 ENTs

25100GROUP-hr

Delivers Quality and Value Pricing

Quality - # 1 Doctor Recommended For Nosebleeds

Recommended by More Than 3,000 ENTS - Even Following Cauterization

Value - The Only Under Dollar per Usage Stop-Bleeding Product

We want to make sure you are aware of BleedCEASE, first aid for cuts and nosebleeds. BleedCEASE stops bleeding fast and easy, regardless of the cause. It's an excellent product for HHT sufferers, providing quality and value pricing. BleedCEASE is the only quality stop-bleeding product at a dollar per usage.

BleedCEASE is unique calcium alginate offering the following key attributes:

  1. As soon as it comes in contact with blood, it releases calcium, a coagulant which accelerates the coagulation process.
  2. The BleedCEASE fibers are highly absorbent, absorbing up to 20 times its weight.
  3. When removing, BleedCEASE doesn’t stick to or tear new clots, which would cause rebleeding.
  4. BleedCEASE is a 100 percent natural based polymer. As such there are no side effects and no contraindications with any medications being taken.

BleedCEASE is easy to use – the most consumer friendly stop bleeding product:

  1. Twist or fold insert all the way into the nasal cavity until flush with base of the cavity.
  2. Do not leave anything hanging out – make sure it has good contact with break in vessel wall.
  3. No need to pinch bridge of nose.
  4. Immediate return to what you were doing.
  5. Easy removal after 30 minutes.
  6. No sticking to or tearing new clots – no rebleeds.
  7. Also use for topical bleeding including on gums and tongue.

Comments from HHT Sufferers:

“My husband has HHT and suffers with frequent nosebleeds. It upsets him and he is embarrassed when they occur. He recently discovered BleedCEASE and it works! He has them at work, in his truck and in both bathrooms in the house. Sometimes if he has heavier bleeding, he has to go through two, but it does work.”

“I have HHT and recently became aware of BleedCEASE. I have found it to be an excellent product for treating my nosebleeds. I particularly like that it doesn’t stick to newly formed clots when I remove it – no rebleeds.”

For more information go to www.bleedcease.com - request a trial sample - learn where to buy

*Sponsorship and advertising does not constitute product endorsement by Cure HHT*

Angiogenesis Publishes HHT Summary and Abstracts

CureHHT-Banner Abstract RegOnlineIn June, Cure HHT hosted more than 220 physicians, scientists, nurses, genetic counselors and advocates from 18 countries at the 11th International HHT Scientific Conference. This was the first time the conference was hosted in North America, and the first time our organization was the sole host for the entire event.

The biennial scientific conference provides an opportunity for the most prestigious HHT experts in the world to discuss their research on every topic from basic science to clinical trials, all of which will lead to new and improved therapies for HHT management.

We are very excited that the executive summary of the conference, including overviews of the 66 presentations and 96 research posters shared over four days, is now available online from the journal Angiogenesis. Some of this information may be difficult to understand - our researchers are the best in their fields, after all - but we encourage you to share the article with your HHT physician, and to watch the recent webinar that addresses the conference summary.

Angiogenesis HHT EXECUTIVE SUMMARY

Angiogenesis HHT ABSTRACTS

*The online article fee of $40 per article has been waived through December 15 to allow our community to access this critical information.*

HHT Research Breakthroughs

November 11, 2015
Presented by: Dr. Christopher Hughes, Chair, Cure HHT Global Research and Medical Advisory Board and Dr. James Gossage, Cure HHT Medical Director

Presenter

Dr. Christopher Hughes is a Professor at the University of California at Irvine and Chair of Cure HHT’s Global Research and Medical Advisory Board. Dr. Hughes holds a Bachelor’s of Science (Hon) degree from University College, London, England and a PhD from King’s College, University of London focusing in neuropathology. Dr. Hughes has extensive experience in the field of vascular biology and the process of angiogenesis, in particular, his lab has studied the role of notch signaling in vascular development and they were the first to demonstrate the role of notch in regulating tip cell function during angiogenic sprouting.

Dr. James Gossage is Director of the Pulmonary Vascular Disease program and HHT program at Georgia Regents University and he is the Medical Director for Cure HHT. He received his medical degree in 1984 and did a fellowship in Pulmonary and Critical Care Medicine at Vanderbilt University from 1988-1991. Dr. Gossage has taken care of HHT patients since 1995 and opened up his HHT Center of Excellence in 2003. In 2008 he was appointed Medical Director of the HHT Foundation, now known as Cure HHT. Dr. Gossage’s research and clinical interests include HHT, pulmonary hypertension, pulmonary embolism, and right heart catheterization.

Webinar

The 11th International HHT Scientific Conference, sponsored primarily by Cure HHT, brought together 250 of the world’s leading HHT experts in both basic research as well as clinical practice focusing on translation of findings between the fields. Basic research is the engine that drives discovery of new drugs and therapies, but it relies on constant input and feedback from clinicians.

Join Drs. Hughes and Gossage as they review advances in HHT research and treatment presented at the 2015 International HHT Scientific Conference. Hear about advancements in Avastin treatment for bleeding; screening and treatments for PAVMs; and the latest basic science research that will lead to clinical trials and drug therapy! After the presentation, they answered your most pressing questions.

Webinar Highlights

  • Executive Summary of the research presented at the 11th International HHT Scientific Conference; published in the October 2015 edition of Angiogenesis This publication is free to view from now through December 15, 2015.
  • Download the pdf of the Executive Summary and the Abstracts presented at the 11th International Scientific Conference as they were published in the October 2015 edition of Angiogenesis
  • Novel drug therapy effectiveness reported in clinical trials
  • Valuable information collected through Outcomes Registry in France
  • New protocols for follow-up screenings of lung AVMs in HHT patients

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. If you found value in this information, please consider making a donation NOW to keep this initiative moving forward. It is through the generosity of our donors that we can continue to provide this valuable education to the HHT community.

 Donate Now Button - Blue Rectangle

 (Please write "webinar" in comment section of donation form)

Ask the Doctor: James Gossage

Q: What are common symptoms of pulmonary AVMs and how can they lead to a misdiagnosis?

Dr. James Gossage, Cure HHT Medical Director: Pulmonary AVMs (PAVM) are the most common serious problem in patients with HHT and are seen in 30% to 40% of patients. Common symptoms of PAVM include shortness of breath, low oxygen levels when checked by finger oximetry and hemoptysis (coughing up blood). Shortness of breath and low oxygen levels are often misdiagnosed as other problems such as asthma and heart disease because the standard chest X-ray may be normal, especially if the PAVM are microscopic. Hemoptysis is less likely to be misdiagnosed because this symptom usually results in checking a CT scan of the chest, which usually finds the PAVM.

In any case, the best first test for finding PAVM is a contrast (“bubble”) echocardiogram which shows shunting in the lungs – a characteristic finding of PAVM. Less common symptoms of PAVM include stroke and brain abscess (infection on the brain). These may also be misdiagnosed because physicians do not usually look at the lungs in case of these symptoms. Again, a contrast echo should find the PAVM. Bottom line, if you have any of these symptoms and they are eluding diagnosis or not getting better, please ask your physician to consider PAVM and ordering a contrast echocardiogram.

Ask the Doctor: Justin McWilliams

Q: How does alcohol affect the blood, and what can the results be for an HHT patient?

Dr. Justin McWilliams, Co-Director of UCLA HHT Center: Alcohol has several effects on the blood which are relevant to HHT patients. First, alcohol acts to inhibit platelet aggregation, meaning the platelets that make your blood clot become less sticky, making your blood thinner. This explains why moderate alcohol consumption (1-2 drinks per day) is thought to be good for heart health, since it may help prevent formation of clots in the heart vessels, which causes a heart attack. However, in an HHT patient, thinning of the blood may cause worsening of nosebleeds or GI bleeding.

Alcohol consumption also causes vasodilation, meaning blood vessels can enlarge slightly- this in part can account for the warmth and flushing felt with alcohol. Again, this can be a favorable for narrowed or blocked vessels, in the heart for example, but dilation of the telangiectasias (and the arteries which supply them) in HHT patients could increase bleeding.

Anecdotally, alcohol (particularly red wine) has been one of the most common triggers of nosebleeds in my HHT patients. That being said, a large portion of HHT patients tolerate alcohol without ill effects, which underscores the complexity of the disease and of the blood clotting pathways, which cannot always be predicted in an individual patient. I counsel my HHT patients to enjoy alcohol as they wish, but to pay attention to whether alcohol triggers bleeding - if so, limiting or eliminating alcohol is a reasonable strategy to reduce bleeding.

18 More Patients Needed for Avastin Study

5-avastinA Letter from Dr. Amelia Clark of Stanford University

Hi Cure HHT Community,

I am writing to tell you we are excited to have reached our halfway point for patient enrollment! That's 22 inspiring patients who have enrolled in the trial and received their surgery and injection of Avastin or placebo. HHT patients are incredibly committed, and the response rates for our follow up surveys has been nearly 100 percent.

We have had individuals and families traveling to us from all over the country, and it's the support and outreach from Cure HHT that has made this possible.

We had a big rush of enrollment after our Webinar last Spring and a very busy summer of enrollment. I would really like to push through to complete enrollment of the last 18 patients over the next nine months.

It is our hope that this trial will demonstrate the beneficial effects of Avastin for patients with HHT- benefits which we hope will include improvement in nasal bleeding, better quality of life and a significant reduction in patient and hospital level costs for treating HHT-related nose bleeds.

Did you know you can travel to Stanford University for free?

Thanks to the generosity of one of our donors, Cure HHT is pleased to offer financial support to offset reasonable travel expenses to Palo Alto, CA for clinical trial participants who have a documented financial need. Detailed information will be made available when a participant is enrolled in the clinical trial.

What do I have to do to participate?

Complete, save and email the ELIGIBILITY FORM to [email protected]

Where can I find more information?

Just click here.

 

amelia clarkWarm wishes,
Amelia K. Clark, MD
Resident Physician
Department of Otolaryngology - Head and Neck Surgery Stanford University

 

 

Cure HHT Welcomes New Board Members

WELCOMEJoin us in Welcoming Alyson Conger, Sara Palmer and Jim Lapides!

We are pleased to announce the appointment of Alyson Conger, Sara Palmer and Jim Lapides to the Cure HHT Board of Directors, a role dedicated to guiding the global foundation toward new levels of awareness and finding a cure for HHT.

 

Alyson Conger

 

"I have personally watched the growth of the foundation since my childhood as my parents have been involved since the beginning. Our family has suffered great tragedies with the disease, but I have experienced firsthand the progress in screening, treatment and awareness for HHT patients. I look forward to being part of the movement for a cure and continued advances to benefit my children, grandchildren and the entire HHT community." Alyson Conger, Provo, UH

 

 

 

Palmer, Sara Headshot

 

"Joining the board is way to deepen my involvement and work closely with other committed volunteers to improve education and awareness as well as to support research that leads to better treatments for HHT. My hope is Cure HHT can increase the rate of diagnosis; help develop drugs and other non-invasive treatments; and, ultimately find a cure for HHT.” Sara Palmer, Baltimore, MD

 

 

 

lapides

 

“I am fighting for a better life for me, my family and everyone else who suffers from this disease. Our organization and science are ready for a major leap forward, and we are closer to a cure than ever before.” Jim Lapides, Brookline, MA

 

 

 

 

> Full Board List

Continuing Medical Education

 

HHT for Clinicians at the 17th National Patient and Family Conference

CME Evaluation Form - Attendees who registered to receive continuing education credit need to print, complete and email the CME evaluation form to [email protected] by August 27, 2014. A certificate will be issued upon receipt of this documentation.

 

July 18-20, 2014 
Hyatt Regency
Santa Clara, California

Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome, is a potentially life-threatening genetic disorder that, if properly diagnosed and treated, can be managed and tragedies can be averted. This program is designed for medical professionals who are likely to encounter HHT patients, among them: internal medicine, otolaryngology, gastroenterology, cardiology, interventional radiology, neurology, genetic counseling and nursing.

Accreditation Statement
This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of the Academy for Continued Healthcare Learning and HHT Foundation. The Academy for Continued Healthcare Learning is accredited by the ACCME to provide continuing medical education for physicians.

ACHL has been accredited as an Authorized Provider by the International Association for Continuing Education and Training (IACET). ACHL is authorized by IACET to offer 1.3 CEUs for this program.

Provider approved by the California Board of Registered Nursing, Provider Number 14803 for 12.4 contact hours.

Credit Designation Statement
ACHL designates this educational activity for a maximum of 15.5AMA PRA Category 1 Credits™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

Activity Objectives
Upon conclusion of this conference, participants will be able to:

  • Define the diagnostic criteria for HHT
  • Identify treatment options for Pulmonary and Cerebral AVM
  • Identify treatment options for Epistaxis
  • Identify treatment options for Gastrointestinal and Liver AVM
  • Discuss new potential therapies for the management of refractory HHT complications

Download the Conference Brochure

 

Medical Conferences

Past Events:

CDC Conference: HHT in the 21st Century

March 5-6, 2008
Atlanta, Georgia

The Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International, in conjunction with the Center for Disease Control and Prevention (CDC), held a landmark conference on March 5 – 6, 2008 at the Tom Harkin Global Communications Center in Atlanta, Georgia.

The purpose of this conference was to define and prioritize objectives to improve clinical outcomes, enhance the quality of life for those affected by HHT, and reduce intrinsic and extrinsic costs related to HHT treatment.

Please click on the following links to learn more about the Conference:

Over 60 health care professionals including: emergency medicine physicians, school nurses, family practitioners/internal medicine, pediatric specialists, physician assistants, dentists and dental hygienists, dermatologists, gastroenterologists, otolaryngologists, hematologists, pulmonologists, neurologists, cardiologists, radiologists, geneticists as well as representatives from governmental and non-governmental organizations attended this national conference. You can view participants by clicking on Participant List.

HHT is a long neglected national health problem that affects 75,000 Americans. HHT is a multisystem vascular genetic disorder producing arterioveneous malformations in the brain and lung which may result in stroke or hemorrhage. Twenty percent of children and adults with HHT die prematurely or may become disabled due to lack of recognition by the medical community. These outcomes are largely preventable with proper intervention. Timely diagnosis and treatment of HHT could improve outcomes and quality of life for people living with HHT while eliminating $6.6 billion in avoidable health care costs.

The conference was the first step in addressing this national health issue by identifying outreach programs that will increase surveillance, increase early recognition of people affected with this genetic condition, and support life saving interventions

For more information, contact Marianne Clancy, Executive Director of the HHT Foundation International, at 800-448-6389 or email her at [email protected] .

Our achievements in these areas during 2003-2006 were possible largely thanks to the support and generosity of our members and from grants received from John Abele on behalf of The Argosy Foundation.

NIH Workshop - HHT Vascular Biology & Pathophysiology

June 8-9, 2006
Bethesda, MD

HHT Foundation in conjunction with the National Institute of Health (NIH) sponsored an HHT Workshop for basic scientific research. The conference provided an opportunity for NIH to formulate an HHT research plan. The workshop included a mix of keynote talks, platform presentations, and open discussion on several themes, including:

  1. Transforming Growth Factor-Beta Pathway and HHT
  2. Endothelial Biology and HHT
  3. Vascular Biology and HHT
  4. Chemical Genomics and HHT
  5. Organ Pathophysiology in HHT
  6. Click on the link below to view the Overview of the Program:

http://www.genome.gov/19519386

Clinical Practice Guidelines for HHT

November 15-16, 2006
Toronto, CA

The Consensus Development Conference consists of a group of experts in the field of HHT brought together to work collaboratively with professional facilitators to improve diagnosis and treatment of HHT. The goals of the conference are to review existing evidence on specific medical issues in a systematic fashion, to obtain expert consensus where scientific evidence is lacking, and to synthesize recommendations for Practice Guidelines

Specific Objectives

  1. To revise the existing Clinical Practice Guidelines for the diagnosis of HHT (Curacao Criteria) by incorporating the utilization of molecular genetic testing.
  2. To develop Clinical Practice Guidelines for the diagnosis, screening, and treatment of the major areas of clinical concern in HHT, including chronic epistaxis (nosebleeds), pulmonary arteriovenous malformations (AVMs), hepatic vascular malformations, cerebral AVMs, gastrointestinal bleeding, and skin telangiectases.
  3. To develop materials for and approaches to dissemination of the Clinical Practice Guidelines for health professionals. Examples include peer-reviewed publications, a site on the HHT Foundation International web page, and a multimedia presentation that would be available to individuals or educational and training programs that wish to teach about HHT.
  4. To develop recommendations for research priorities that will continue to improve the quality of evidence upon which the Clinical Practice Guidelines are based

Outcomes

At the conclusion of the Consensus Conference, the following will be identified and established:

  1. Clinical and genetic criteria by which a definitive diagnosis of HHT can be made
  2. Criteria for diagnosis and treatment of the most common symptoms and organ manifestations of HHT, including chronic nosebleeds, GI bleeding, pulmonary and cerebral AVMs, and liver vascular malformations.
  3. Protocols for routine follow-up by primary care and specialty physicians.
  4. Protocols for treatment of acute episodes.
  5. Recommendations for publication and broad distribution of Consensus findings and HHT Standard Practice Guidelines, and presentation at scientific and professional symposia.
  6. Strategies developed for implementation of the Practice Guidelines as the standard of practice and for assessment of the impact of Practice Guidelines on physician behavior and HHT care in North America.

2004 Research Grant Recipients

Treatment of Disease

Laser Treatment for Nosebleeds: When Is It Likely to Work?

Mahoney, Elizabeth

Elizabeth J. Mahoney, M.D.  

Shapshay, Stanley
Stanley Shapshay, M.D.

Publication
"New classification of nasal vasculature patterns in hereditary hemorrhagic telangiectasia". American Journal of Rhinology. Volume 20, Number 1. January-February 2006.

Over the years, a wide variety of treatments have been used to help manage nosebleeds in HHT patients including electro-cauterization, nasal packing, septodermoplasty (see article herein), arterial embolization, arterial ligation, and hormone therapy. While many of these interventions have achieved moderate success in the management of the HHT patient's nosebleeds, recent attention has focused on the use of lasers for the treatment of intranasal telangiectases in patients with HHT.

Finally, patients responses to therapy were evaluated.Patients were identified as a responder to the Nd-YAG laser treatment if they noted a 50% decrease in the severity and frequency of their nosebleeds for a period of greater than 6 months.

Interestingly, vascular pattern I was most common, while vascular pattern III was least common. Patients with vascular pattern I uniformly demonstrated a good response to the Nd-YAG laser. Conversely, nearly all of the patients with vascular pattern II were poor responders to the Nd-YAG laser treatments. Finally, 80% of patients with pattern III demonstrated a good response to the Nd-YAG laser photocoagulation treatment.

In addition to correlating vascular pattern with response to Nd-YAG laser photocoagulation, vascular pattern classification was also correlated with disease severity. Patients with vascular pattern I tended to be most mildly impacted by HHT, while patients with vascular pattern II were more severely impacted. Those with pattern III were more broadly distributed over the range of disease severity.

These findings are important for physicians caring for HHT patients as they may help to predict response to laser therapy. For example, when a patient with HHT is noted to have isolated intranasal telangiectases, he or she can be counseled to anticipate a good response to Nd-YAG laser photocoagulation, while patients with a more diffuse vascular pattern almost uniformly have a sub-optimal response to their Nd-YAG laser treatments. For patients with patterns I and III, treatment with the Nd-YAG laser will typically provide an improvement in the intensity and frequency of epistaxis for a minimum of six months. The procedure is simple, requires only local anesthesia with sedation, and has few risks or side-effects. To conclude, the findings in this study will allow otolaryngologists to better counsel HHT patients and improve stratification for therapy.